Daydreams & Diaries

by Taylor Black

  Well, so begins a new year. Maybe this one will be better than the last. I can’t help but wonder what twists and turns life has in store for me this year, but I know I can handle whatever comes my way. I went to the doctor’s today. All my counts are good which is always good news, but Dr. McArthur says he wanted me to go to Duke w/in the next week & when I go I have to stay for 7-10 days. What a nice B-day present that would be huh? Well, I suppose there are far worse things. I can’t get all worked up about it. After all it’s only as bad as you make it out to be. At times it is extremely difficult to not wallow in self-pity, but in those moments you must rise above and take heed of the lesson you are receiving. Because after all isn’t that what great tragedies and triumphs really are: lessons to be learned? So, I suppose for now I’ll keep my eyes open and await my teaching.

  Taylor’s Diary

  January 8, 2001

  Today was the most beautiful day of the year thus far. I went to the beach and walked to the inlet. The sun was shining brilliantly on the ocean, which was a thousand different shades of blue and green. It was definitely one of God’s most spectacular creations. I have to go to Duke soon for the stem cell harvesting (something I’m not @ all looking forward to). Apparently I have to get an MRI beforehand. In all everything’s been good lately except I have had two little upsetting moments. They passed and I picked myself up. I am confident that I will beat this. It only wins if you let it win. Otis’s mom has been doing Gin-sen Git-su (sp?) sessions w/me. It is method of holistic healing that deals with energy flow in your body. It is very soothing and I have a feeling that it will have positive effects. I haven’t seen much of anyone lately. Everybody’s in boyfriend mode. Hopefully, I’ll hang out w/them soon. Karly and Gia went to Orlando w/o me. I have a feeling they want to move in together, just the two of them. Whatever, life is so short there is no use in letting things like that get to you. You just gotta let things go. I think I’ll start doing meditation everyday @ the beach. I think that would be a calming experience. I had the most awful dream about Jeff last night that seemed so real and after I woke up I was uneasy for a couple hours. I hope nothing happened to him today. I’m still waiting to talk to him.

  Taylor’s Diary

  January 11, 2001

  Well, today is my 18th birthday and it was not much out of the ordinary. Looking back on this past year my life was very different and promises never to be the same. Well, it is always said that “change is constant.” I believe that as long as you embrace the change and allow the twists and turns to teach something there will never be something that you cannot conquer. I know that this whole experience will alter my life forever.

  I only hope that I will be able to retain the day to day enrichment I have derived from the whole situation. So, in all, my birthday was a good one. After dinner @ the Olive Garden I went out with Jeff (Mike was there). There are some people you wish would never walk out of your life, but once they have it is impossible for them to make a smooth entry back in. I miss knowing Mike. He is truly a good person.

  P.S. I go up to Duke next Thurs. but I have to get a catheter installed in the other side of my chest and I only have to stay up there until the following Wednesday. Then, I think after it’s off to Gainesville for radiation.

  That was the plan on Taylor’s 18th birthday, but the tumor had other plans. The chemotherapy hadn’t worked and as a result, the tumor began to grow once more. Taylor would go to Duke, not for a stem cell harvest, but for a second brain tumor operation.

  Taylor’s Diary

  January 23, 2001

  Sorry I didn’t write before but I had just gotten out of surgery and I had an IV sticking in my arm that made it quite impossible for me to write. So, where should I begin? Well, brain surgery (at Duke) was a surreal experience all together. First, they put me under and then they woke me up. One of the doctors was talking to me for what seemed like an hour, asking me to do various things such as move my arm, tap my hand and other basic motor skills. I was coherent during the operation and then they put me back under and I woke up in intensive care.

  So now I’m out of intensive care and out of the hospital waiting in a hotel room @ the University Inn. Tomorrow we are going to have a consultation with Dr. Friedman. We got the pathology back today and Henry Friedman is apparently working out an aggressive game plan. As far as my knowledge of the situation goes they weren’t able to extract all of the tumor because that would have damaged vital tissue. So, now I’m pretty much in limbo. My mom mentioned something about doing some of the treatment up here. If anything I think that would be detrimental to my health because I would be out of my element and away from all the systems of support since its mind over matter in a situation like this, every little bit counts. I just need to focus. I know I can beat this. I know I can. It’s just gonna be a bitch you know. But every day is one more under the belt. I just need to remember that every night before I go to bed. I’m trying to let this flow through me, but it seems there is something blocking me. For now I can just breathe. Breathe.

  The pathology of the tumor was that it was cerebral neuroblastoma with p-net tendencies. The protocol (the method and order of treatment) was: Stem cell harvest one week. Radiation at Shands Hospital at the University of Florida (where sister Courtney was going to school) for 6 weeks and then back to Duke to see where we would go. Eventually the plan would be to put Taylor in the isolation ward for a month or two. But the best laid plans of mice, and men and physicians….

  Chapter Twelve: Country Mice

  Looking over her journal entry for Taylor’s 18th birthday, I began to think of a trip I made with her and Courtney ten years before.

  When Taylor was eight and Courtney ten we visited my Brooklyn brother Michael and his wife, Aunt Nancy, using their Lincoln Road limestone as headquarters for a visit to New York City. It was the first time on the subway for my daughters, although they had ridden the train from my mother’s house in Wayne into Philadelphia when visiting there. But a New York subway is, shall we say, a bit more challenging than the Paoli Local and my daughters had the fawns-in-the-headlight appearance as we boarded the subway at Prospect Park. The fearsome New Yorkers we envisioned turned out to be rather nice, if somewhat aloof, taking refuge behind a newsprint wall of the “Times” and the “Daily News.”

  Taylor lost her deer-look quicker than Courtney, not surprisingly. When I would drop them off at the movies, Courtney made Taylor buy the tickets because Taylor was more at ease with strangers, like some pint-sized Blanch Du Bois in A Streetcar Named Desire, I thought, although Taylor wasn’t a few ants short of a picnic like Tennessee Williams’s tragic heroine.

  We changed trains like veterans and finally exited at the World Trade Center because the girls wanted to see the city from atop the tallest structures in Manhattan. When I was a boy I had visited the Empire State Building but alas, Meg Ryan never came to my rescue on the observation deck, but then my dad wasn’t Tom Hanks either. Of course by 1991, King Kong had already carried Jessica Lange to the top of the towers, snubbing the once haughty Empire State Building, and the girls had seen that movie and were curious about the towers. That was my fault I guess, for not showing them the Depression Era Fay Wray version of “King Kong” from the 1930s, when Kong climbed what was then derisively called “The Empty State Building.”

  The World Trade Center building we were on, and I can’t remember if it was the North or South tower, seemed to sway ever so slightly, but the girls were excited by the vista. One could literally see for miles and miles. It is still hard for me to fathom that the Towers are gone now.

  After the World Trade Center, the three of us were off to the Battery and a boat ride to Miss Liberty. I remember giving the girls a short lecture on Ellis Island as we ferried across the river. I even talked to them about how family names were changed because of the difficulty in communication. A history teacher is, after all, always on call, even in the summer. One never knows when the history teacher will be called upon to cite some
obscure fact!

  Liberty Island was very crowded. “Stay together and don’t wander off,” I ordered.

  Foolish father. Liberty Island was the largest right field in the world to Taylor. Where were the dandelions? Where were the butterflies? Let us have a dance to summer, to life!

  I turned around and Taylor was missing. She had danced off to somewhere.

  I asked Courtney where Taylor was.

  Courtney was as startled as I, but not totally surprised. Courtney knew her little sister better than anyone, and she knew Taylor had a habit of wandering off on her own. Her brother Chad had had the same wanderlust, often walking away from kindergarten to go home and grab his fishing pole and head for the creek. There were seven kids in the blended family after all, and sometimes we came up short in the head count. Try running a household with seven kids. It ain’t easy, but it is always interesting. But that day on Liberty Island I only had two of the rascals and I should have had a tighter rein.

  I searched for the panic button and found it. “We’ve got to find her!” I shouted. I thought, she couldn’t have gone ahead to the pedestal could she? Where the @#@# was she!

  “Relax, Dad,” Courtney said evenly, trying to calm her stressed out father. “She’ll turn up. She always does.”

  Not for thirty minutes she didn’t. I remember thinking I would need Grecian Formula after this outing. I would be a strawberry blond no more. We scoured the island and then Courtney spotted Taylor, sitting on a bench, crying. I ran over to her and hugged her.

  “You left me!” she wailed.

  “No we didn’t, Tale,” Courtney intervened. “You walked off again.”

  “Courtney,” I said, trying to regain parental decorum. “Hold Taylor’s hand. We are going to climb the @#@# steps to the statue to visit the @#@# crown.”

  My children looked startled by my choice of words. But then Taylor perked up as if she smelled adventure, exploration. The faucet which was on her face turned off. No more tears.

  The climb to the crown was laborious but it wasn’t exhausting as it took a minute for every step upward or so it seemed. Talk about taking one small step for man. An endless chain of people were climbing to Lady Liberty’s crown as if all of the “tired, and poor and huddled masses” were yearning to breathe fresh air in Liberty’s tiara and had taken that particular day to show up. We were certainly not going to stop. Did Sir Edmund Hillary quit on Mount Everest? The family that climbed together stayed together.

  At the summit we spent perhaps two minutes looking out of Liberty’s crown at the port of New York in the distance. The view was worth the hike to the top, and one more historical-site was checked off our must-see list, joining Sagamore Hill, Teddy Roosevelt’s Oyster Bay home, which we had visited only the day before. My daughters were pleased we climbed to the crown; it would be something to talk about during show and tell when school resumed in August.

  On the subway back to Brooklyn, during rush hour, two kind New Yorkers gave up their seats for my daughters and everything was going well until we crossed the river into Brooklyn and the train stopped.

  “Everyone out!” a conducted shouted.

  “Bomb scare,” someone whispered.

  Transit police entered the car and ushered the passengers out. Taylor and Courtney looked startled, looking to me for a sign of what to do.

  Heck if I knew, it was my first bomb scare too. I grabbed each girl by a hand and exited the subway train and followed the other passengers up the stairs to the street level. I decided to call my brother. Bring in the cavalry to pick us up, I thought. He would arrive on his steed, albeit a VW bug, but a metaphorical steed nonetheless. I found a pay phone and dialed a number. My professor brother answered. Ah, the safety, support and the bosom of my family. Surely Mike would drive out to rescue us! I explained our plight and I remember his words of comfort all of these years later.

  “There should be a bus coming to that corner within ten minutes.”

  So much for the rescue. That was New York after all, and brother Mike might have lost his cherished parking space on his street. What is a bomb scare in comparison to a lost parking spot? So we caught the bus and I simmered inside. I had two little girls and we’ve just had a bomb scare. We are country mice! We aren’t city mice. We are country mice!

  I guess Taylor sensed my tenseness for she took that moment to snuggle up to me on the bus. “I love you, Daddy,” she said and gave me her little hand to squeeze. Courtney gave me a hug as well.

  I decided not to get angry with my brother. What good would it do? We weren’t accustomed to sirens at 3 a.m. We left New York the following morning and the girls never returned during their childhood.

  A while ago at a family reunion I told this story to my brother Michael’s son Wade. He laughed and assured me that he wouldn’t have given up his parking spot either. Family was one thing, Wade said, but a parking spot in New York City was hard to come by. But then, my nephew is a city mouse.

  Taylor’s Diary

  January 24, 2001

  Well, as I write to you now I am on an airplane heading back to Stuart (they told us that if we didn’t take tonight’s flight we’d be stuck in Raleigh til Sat.) and as you can imagine that was just not happening. So after quite a frantic bit of running around we were able to make the flight. I feel so bad for my dad though, his whole purpose in coming was to meet w/Friedman and he didn’t even get a chance to do that (thanks to the red-head: Taylor’s mom). So we had consultation w/Friedman who said that we could go home for a few days (maybe a week if I’m real lucky). But after that I have to come back up for stem cell harvest and then straight to Shands for radiation. The ball park time frame we’re looking @ here is about 6 more months which is doable I suppose. Oh yeah, by the way Georgia, Dr. Friedman’s intern, also happens to be the star basketball player for the Duke Women’s team, so she had a film crew following her around and they got my little bald-headed consultation on camera, which I think bothered Court more than it bothered me, although she was the only one looking beautiful. That’s okay because I’ve been ugly for about 6 months now, a fact that I’m just gonna have to deal w/I expect. In all, my trip to North Carolina was (as usual) one of anticipation upon returning home. And considering that I don’t have a lot more time left @ home I need to savor every minute of it. Right now I am filled w/anxiety about everything. I wonder if Jeff and I will be able to make it through all the time apart. What if he gets used to not having a girlfriend around. I mean really he is a very sexy 18 yr. old guy who has girls throwing themselves @ him even now with me around. Is it really fair for me to ask him to put his senior year on hold just because his girlfriend has cancer? I tell myself that whatever happens, happens, but I am so into him now that I would be devastated to lose him. And what if he just stays w/me so as not to hurt me. I mean really what guy is gonna want to hurt a girl in my situation. I suppose I shouldn’t even begin to think about that because that will surely drive me mad. Right now, and for a while, all my energy needs to be focused on kicking some major ass (something I’m sure I can do) and for the time being I need to use every available asset and Jeff is definitely one of them. Really, he came into my life right before all of this happened and he hasn’t bailed yet. I think that before God puts you in a trying situation like this he gives you all the necessary tools to prevail. You just have to recognize what is needed to fix what. Among my many assets is my amazing family. I was definitely fated that I would have this network of people so incredibly filled with love and hope. If they aren’t a major advantage I don’t know what is. And although I may have the rarest of the rarest of the rare, I’m twelve steps ahead of everyone w/the people I’ve got.

  Looking out for Taylor was a collective effort. One of the things which we knew was that a patient needs an advocate when she is in the hospital. Pam and I took turns on the Duke trips, with sisters Courtney, Tracey, Jennifer and Beth all taking a turn. Aunt Barbara and grandmother Virginia were indispensable as well. Courtney would become the
primary caregiver in early 2001, forgoing a semester at the University of Florida to care for Taylor and get her to her radiation treatments at Shands Hospital.

  Chapter Thirteen: It’s a Wonderful Life

  Scanning the video shelves at the Blake Library for a DVD to take home, I chanced upon a copy of It’s a Wonderful Life; there were Jimmy Stewart and Donna Reed on the plastic case. Bedford Falls, I thought wistfully, and I was suddenly back in my own fantasy world of the past at tinsel time. We would watch the movie one last time at the last Christmas before she died, but I was thinking of an earlier time in her life, B.C., before cancer.

  Taylor was fourteen and we were sitting in our living room about to watch a video:

  It’s a Wonderful Life with Jimmy and Donna. It was one of our Christmas Rituals, along with Taylor’s trimming of the small artificial tree. I finally threw that artificial tree away last year as Courtney and I never brought it out in all the Christmas’s since Taylor’s last. When she left us, it was as if Santa Claus, Rudolph, Elves, the holiday cards, the notes, the presents beneath the artificial tree and the whole tinsel works went with her when she passed on; but when she was fourteen, in the words of Frank Sinatra, it was a very good year.

  Taylor had microwaved the popcorn and was liberally seasoning the mix with butter spray and indeed, the few holiday decorations around the house are due to Taylor. She had her mother’s “ho ho” Christmas spirit. I pushed the play button and the movie began once again.

  “Do you think Clarence will earn his wings, Tale?” I asked her. Yes, it was a stupid question to ask of a child who had seen the movie a dozen times, but it was our ritual icebreaker for the movie. She normally answered with “I hope so,” but that time she responded with, “Do you think there really are angels, Dad?”

  Her reply caught me up short. I hesitated and then answered. “Seems to me there must be.” In my mind I thought, You’re my angel. I wish now that I had said that to her, but I had no idea how true that thought would become.